Seasoned veterens:This one is for you

It seems like most of the people on this forum who have had been battling this beast for many years aren’t really on any preventatives. If I have this right, it seems like they have “tried many preventatives and nothing really seems to work long-term or the side effects eventually outwieghed the benefits.” The repetitive drug theme that I see here is that benzos are used occasionally for the long-termers.

That leads me to my question: Should I really spend (read: waste) months, if not years, cycling through more and more meds and side effects only to eventually get to a point where I just take benzos as needed??? I too, find a little benzo now and then the ONLY REAL relief from my dizzies. I do the migraine diet along with the ulta-low salt diet, I’ve read “Heal your Headache” and I have been on Verapamil since Oct. 2010 and I’m finally up to 180 mg with so-so results. The drug DID get me off of the couch, but there’s room for improvement for sure. My doc also tried a trial of Zoloft which was disasterous. The side effects of Verapamil are the usual ones, with an added bonus: lots of hair loss :frowning: . When he gave me Klonopin to use “very sparingly”, I found it to be very helpful…without side effects. He really wants me to add Nori. and then after months of titrating up on that, there will be another and another and another. I know that I’m a relative newbie to all of this, am I completely wrong in my crude observations?

Hi Pinkone,

Keep in mind that the majority of people on this forum are either new to the diagnosis and others are long timers still trying to get their answers. Others are doing pretty well but stick around to discuss issues/developments etc. Most migraineurs who are treated successfully won’t ever make it on to a forum such as this and/or they’ll drift away when and if they become well. So, the population here is not necessarily representative.

Many people have great success with meds. I am one of them. I am on Prothiaden, which is the first med I tried and I am doing very well on it. About 95% well. I am trying to get off it due to weight gain but it has been excellent in controlling the migraine. I haven’t tried the migraine diet and the only thing I avoid now is red wine.

Read the success stories - it can and does happen.

Vic

Hi Pinkone,

I think this is a very good question. While there are people here who have had very little luck with lifestyle and meds, there are many who have had excellent results with side effects they can tolerate and some with very little side effects at all. I think this forum probably presents a skewed view of the real world. Most here are on here because, for the most part, they are looking for a better solution; they have not managed this well enough for their liking. Overall, the ones who really get better move on and don’t want to think much about this anymore. If you look up in the Success Stories thread there is evidence there of people who have got this under control and who no longer feel the need to post any more. They may drop by once in a while to make sure mvertigo is still kicking along “just in case” but I think that’s the way it goes.

Even though I am here and occasionally complain of bad days and all the rest of it when they come, I still have migraine control that is orders of magnitude better than what I had before I knew what this was. Through lifestyle mods and two drugs, I hold down a full time job and live a mostly normal life albeit with what feels like a ball and chain on my ankle still. So, there is much room for improvement for me and so I keep looking and listening.

I’m sure some will chime in here to say that despite going through a pile of meds they did eventually find something that worked or at least made it bearable again or even put it all back to bed. Baloh will tell you that if you find a med that makes you feel 50% better, you’ve hit the jackpot. I want better than that personally but such is the state of migraine treatment in 2011. It has to get better and be more consistent with time and new discoveries.

I think you should keep trying the different classes of meds until you find better control. There’s no guarantee with migraine unfortunately.

Scott 8)

P.S

My success story is in that thread. I was up to 80-90% wellness within about four months of starting Prothiaden. I think that makes me pretty much a text book success story.

As Scott said, it’s unlikely any of us will have 100% blissful wellness. I still have bad days/times or have “a migraine” but it is manageable and not debilitating. i have a full time job and travel etc. I won’t volunteer for a roller coaster ride any time soon but I don’t feel any loss :lol:

Vic

I’ll chime in and say that after persevering for 4 months on the first med I tried*, plus vit B, Magnesium and CoQ10 (scott I gave up the feverfew!) eliminating caffeine (yeah I HATE to admit it but giving up that 1 cup of coffee per day gave me another 5% after a few weeks) and red wine I’m at 80-85% most days now. A darn side better than the 30% I was at for 6 months. The side effects from my med (some exercise fatigue, a few extra kilos) are a very small trade off and don’t impact on my life to any degree (particularly compared to how I was before).

I just stick around cause I like to annoy Vic with the occasional cheeky comment :lol: .

*OK technically the second med but 4 days on Topamax doesn’t really count as trying :smiley:

Hi Pink,
For me it’s quality of life that’s important, if you find a med that takes some of the symptoms down a notch or two, it’s worth trying till you find the one that suits your body/brain.
It’s taken me 4 years of trialling meds or more after diagnosis, to find the right med.

Prothiaden and propranolol has me up and about, that’s better than sitting on the couch or lying in bed all day crying.
It’s not perfect. I still migraine and yes I want more, but we have to try or we have nothing, no hope. It’s not going away on it’s own.
I was so depressed from constant dizziness I didn’t want to be here any more.

Thank’s to meds I’m feeling better.

jen

It’s my 15YO son who has MAV at our house. He’s gotten almost complete relief from his symptoms with the first medication that he tried, plus sleep management and avoiding aspartame. (Night before last, he didn’t sleep well, and yesterday was a bad day for him. But not like it was back in October and November!)

On the other hand, it took several years of medication trials to find something that worked for his (rather severe) anxiety disorder, without causing unacceptable side effects. As a result, we knew a lot of things NOT to try for his migraine. And the meds he’s on for anxiety are probably helpful for the MAV, so we probably had a bit of a head start.

Mamabear

I agree there are quite a few people that have gotten some help with their meds and lifestyle changes. I have been sick a very long time and still somewhat questioning the MAV diagnosis that i got last Fall but it’s probably true. my problem is drug sensitivity so that’s why i haven’t goten better i think. mine comes and goes all the time. i have been following the migraine diet for the most part - maybe it’s helped maybe it hasn’t - can’t tell if food is an issue yet.

I’d like to try some anticonvulsant that isn’t super strong but i don’t want to go back to my neurologist so i need to find a dr to work with me on that - maybe some neurontin or something - super low dose since im so sensitive.

i haven’t totally given up but i do get really depressed and frustrated off and on believe me after 30 years!

CHRIS

Hi Pink
It’s really frustrating to figure out how to get better and feel better with MAV. I’ve suffered with the dizziness portion of migraine for almost 4 years but I am rather a newbie here and to my diagnosis of migraine variant (it’s all the same I guess). I take topamax (usually 45-60mg daily) and lately have added in regular twice daily used of zyrtec and sudafed due to airborne and food allergies. The addition of daily allergy meds is making a huge difference in decreasing the dizziness for me. Each person has a unique intricate set of contributing factors. I’m really happy for Burd and others who can successfully control symptoms with no meds. However, I have had chronic dizziness and I’d be in bed or stumbling around my house if I was still off meds. And, I’m continuing to work on the food and other allergens that trigger me. Hang in there. This forum has insprired me to keep at it even when I’m discouraged (which has been often at times).
Gail

— Begin quote from “Mamabear”

plus sleep management and avoiding aspartame.

— End quote

Mamabear – does the aspartame mess with his lower gut as well? I haven’t touched aspartame in a very long time until Friday. At work I worked my way through a whole pack of sugar-free gum (the shop didn’t have the sugar version). So the pain levels shot up again by dinner time and I felt really quite ill overall. All night I was up running to the loo and still feel rough. Needless to say I won’t be touching sugar-free gum again. :shock:

Hey Scott,
Did you know there are ingredients in some lollies/candy/mints /gum products that can cause diarrhea when you eat too much, it says it on the back, I was using mints to give up the smokes and became quite sick, with stomach cramps and diarrhea for days, until a friend told me to stop chewing so much gum and it will stop, she was right! I thought I had a stomache virus.
So funny.
I wish I could remember the name of the stuff/ingredients.

jen

I’ve had bad experiences with artificial sweeteners of all types. My hearing starts to go kaput within an hour and keeps getting worse. :shock:

— Begin quote from “scott”

Mamabear – does the aspartame mess with his lower gut as well?

— End quote

Nope. Just dizzy, wobbly, nauseated.

Of course, he only had one piece, not a whole pack. I don’t know what would happen if he had a larger dose.

Mamabear

Xylitol in the sugar free gum caused me the problems, read up says it causes abdominal bloating, diariaah etc.

Christine

i have heard that Splenda can cause cramps and diarrhea also. Some things contain mannitol and sorbitol and I think those are like baby laxatives :frowning:

chris